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Thread: Topamax

  1. #1
    ICN Member
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    Dec 2006


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    Has anyone been prescribed topamax? If so, have you had any luck with it? My pain doctor prescribed it for me yesterday...I don't notice any difference yet but am wondering if it might be a light at the end of the tunnel. I know it's for migraines, but it supposedly can work on nerve pain as well.

  2. #2
    ICN Member mary124's Avatar
    Join Date
    Jan 2003
    Hutto, Texas (30 miles or so outside of Austin)
    I've been using it for headaches for a few years, helps for them, but haven't really noticed a difference for any other pain. Sorry couldn't help any more than this.

  3. #3
    Join Date
    Jan 2006
    I used to get frequent migraines before I had my hysterectomy. (Mine must have been hormonal, since I rarely ever get them now.) Anyway, I used Topamax for a while back then. It helped with the Migraines, but did nothing for my IC/pelvic pain. I went off it because after I had my hyster, I didnt need it anymore. Ultimately, I went on meds that would help ALL of my pain, (migraines, when I still get one occasionally, and of course pelvic and IC pain.) However, I can tell you that one REALLY NICE side effect for me, was loss of appetite. It worked great as an appetite suppressant for me. LOVED THAT!! That was why I was so hesitant to go off of it, but ultimately needed something that would help my IC/pelvic pain.

    Interestingly, this is a med that has been in the media in the last few days, since Howard K. Stern revealed during the hearing yesterday that Topamax was one of the meds that Anna Nicole Smith was taking. There was a segment on Topamax this morning on one of the news shows, with one of the Drs. saying it was also used frequently as a drug for Bipolar Disorder. (My Mom is Bipolar and has also taken it.) It is an anticonvulsant that is used in seizure disorders, and is also used for neuorpathic pain.

    I think it is worth a try! It works similarly to Neurontin (which I currently take). Though, Neurontin seems to help my pain more than Topamax did. But, I wasnt on a very high dose of Topamax. If I switch again, I would consider going back on it, and trying it at a higher dose, since I didnt have any side effects, except loss of appetite (which for me was a great one!) Oh, I forgot! I did have one other side effect on it....dry mouth. (But, it wasnt bad enough that I would have stopped taking it for that reason.)

    Anyway, I hope it helps you!


  4. #4
    Registered User Sparkspeak's Avatar
    Join Date
    Feb 2007
    I take Topamax to control migraines and it has worked very well for me. If you want to know more about how it works for neuro pain, please check out a forum that I belong to, called the TopaTrip. There are lots of great ladies on the board (like here), and they will answer your questions and give you great advice. Here's the link:

    One thing you need to watch out for when taking Topa is that you can get dehydrated very fast - you need to make sure to drink lots of water. Standard rule is 1/2 to 1 oz. of your body weight in water per day, i.e. if you weigh 140 pounds, you need to drink between 70 to 140 ounces of water a day. I know that sounds like a lot, but it will help with the brain fogginess and tinglies that you might be experiencing. It's not the greatest thing for someone with IC, since the bathroom isn't really our friend, but you'll have to figure out a way to balance it out.

    It does have a side effect of loss of appetite - some people are prescribed topa to help them lose weight. I have lost 10 pounds since going on in June of 2006. Since you're drinking so much water to combat the dehydration, you're really not hungry - at least I wasn't.

    There is a whole section on the board dedicated to nerve pain - the moderator Julie is great. I hope you check it out and good luck!
    Diagnosed IC 2/15/07Uterine fibroids
    Ovarian cysts
    Topamax for Migraines

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